How Cool is That?

This is a guest post by Cheryl Cohen, who is the Online Community Director of IAN Project at Kennedy Krieger Institute.

A few weeks ago, in northern Maryland, we received the gift that kept on giving: two back-to-back blizzards that delivered nearly four feet of snow. Housebound for several days, I began to gain a better understanding of the phrase stir crazy, and I turned, like many people, to the Internet for solace. Next time you are snowed in, stir crazy, or even simply curious about what families are saying about autism spectrum disorder (ASD), you should know about the Interactive Autism Network (IAN) and IAN State Stats, in particular.

IAN State Stats is a tool that shows you how families have responded to questions administered by IAN Research, the largest online autism research project. IAN State Stats summarizes data on complex issues to indicate the overall status and trends in autism treatment, diagnosis, and expenditures. People involved in policy and public health decisions use these tools to compare state performance against national performance and to signal key issues to be addressed through policy interventions and other actions. The data used for analysis reflect the current IAN Research data.

Here is one of the charts from IAN Stat Stats:

This graph shows the mean (average) amount of time in months between the time that parents first felt that something was wrong with their child’s development to the time that the child was first diagnosed with an ASD. It compares the data reported by research participants in Maryland (the state that I selected) to the U.S. as a whole. Considering the vital importance of early intervention, this lag time (gap) between the time parents of children with ASD recognize that something is wrong and when they are able to get a diagnosis is of interest to policy makers and advocates.

The information presented is based on an analysis of responses from the questions:

How old was this child when you FIRST became concerned that something was wrong with his/her development? (Choices include a range of ages)

What was this child’s FIRST autism spectrum disorder (ASD) diagnosis?

When did this child receive this FIRST ASD diagnosis?

You can see that the lag time is very long, and that it varies widely by ASD diagnosis. You can also see that the lag time in Maryland is not very different than that in the U.S. as a whole.

If you look at a state in which people have less access to care, such as Louisiana (below), you can see that the lag time for most ASD diagnoses is much longer there than for the U.S.

Though these results are discouraging, exploring the IAN data is a pretty cool way to spend a snowy day.